Active Participatory Health Monitoring

Commencing January 2020, A/Prof Anneke van der Walt was awarded a three-year Trish Translational Research Project Grant titled, “Active Participatory Health Monitoring in people with Multiple Sclerosis (Active-MS)”.

The aim of the Project is to implement and validate novel tests that can be used to predict, early on, if patients with MS are likely to have a good or poor outcome. This information could be used in clinical practice to optimize treatment choice quickly and efficiently, to ensure people with MS maintain the best quality of life and productivity.

To achieve this aim, they aim to recruit 300 participants at four different hospitals over 12 months who will complete a series of simple tests using their smartphone at home. Participants are also asked to share information about their MS that is collected during routine care clinic visits approximately 6 monthly, and to complete a quality-of-life questionnaire, depression and worry, and work productivity questionnaire at these routine care clinic visits for at least 12 months or the entire study duration if they chose. They are also asked to provide access to their routine magnetic resonance imaging (MRI) scans done in the 24 months preceding this study and for 36 months of observation during this protocol (estimated 4 routine scans).

Progress so far is that the study has been approved at all four hospital sites, all of which have Ethics and Governance approval. The first patient was recruited in November 2020, and there was a total of 140 patients enrolled in the study on 31st December 2022.

With this Project commencing January 2020, Covid 19 had a large impact on recruitment and resources as staff were redeployed to other areas to assist in the management of Covid.  Due to these constraints, approval has been granted to extend this study, the new completion date being 31 December 2023.

Unfortunately, due to significant under recruitment, one of the sites has been closed for further recruitment. However, Alfred Health will continue recruitment past their original target to increase the total recruitment number as much as possible.

This study has contributed to A/Prof van der Walt and her team’s successful collaboration with Redenlab, SNAC and Roche.

One of the three apps used for testing in this study, Floodlight Open, closed in April 2023. Therefore, the team has started collaborating with Roche to move to their new app Floodlight MS. The tests within the new app are identical; however, this app is not open access and requires collaboration with Roche. To make it a smooth transition between the two apps, we have made the necessary amendment to the protocol and PICF. These have been approved by Alfred ethics. The other three sites have also submitted the amendment.

A/Prof van der Walt and her team aim to finish recruitment mid 2023 at all sites. In addition, they will continue their monitoring of the adherence and data quality to ensure that study objectives can be met and are aiming to produce publications after year 3.  We look forward to analyses and publication of the findings of this study.